Education is Key in Spreading the Word about CHD

There’s this wonderful group called the Zipper Sisters that I’m a member of on Facebook. It’s such a supportive place for all things CHD. One of the things I keep reading over and over again, however, are their interactions with people not familiar with CHD.

Some of these women have been told they are too young to have a heart condition. Now, down here in the South, people might think when they say that they’re being nice by making note of the fact that someone doesn’t look sick. But, for a CHDer, that’s about as bad as a “bless your heart.” Other members have received the occasional tips on how they can heal their heart through diet and exercise. Insert eye roll.

The comments that really make my blood boil are the ones where members are accused of making up their condition or worse yet, being told if they pray enough and believe, they will be healed. Why does that bother me so much? Because regardless of your religious preference, we are all miracles and have been given a second chance at life through the skilled hands of surgeons and knowledgeable minds of our medical teams.

These statements sting because they seem to lessen our struggle and negate our fight. In these moments, however, we must remember the importance of educating the uneducated about CHD.

How do we do this? First, we must become educated about ourselves. If you don’t know what your defect is, talk with your cardiologist and have him or her explain it to you. As an individual who works in pediatric cardiology, I can’t tell you the number of times I hear that a patient or patient’s family member had a heart murmur and when I inquire further, I am met with blank stares and a lot of I don’t knows. Knowing your condition and your family history is the first step in educating others.

Even when we become educated on our own condition, I’ve found that launching into an explanation of it is rarely effective. Instead, I share that I have a birth defect that affects the structure of my heart. Usually, this results in additional questions about my specific defects, surgeries and future prognosis, which I gladly explain in the best layman’s terms possible. This opens up opportunities for me to invite them to events where they can learn more or support CHD, like Congenital Heart Walks.

When you have a chronic health condition, it can be easy to become frustrated when someone doesn’t understand, but we have to take a deep breath and remember that his or her lack of understanding comes from lack of knowledge. When we first empower ourselves with knowledge about what it means to have CHD, we can begin to empower others and together, we can continue making a difference for the world’s number one birth defect.